Thursday, January 29, 2015

Living with Uncertainty

Living with ME/CFS means living with uncertainty. This crazy illness is often characterized by ups and downs in seemingly random patterns. As someone who is analytical and likes data & facts, this constant stream of mysteries can drive me crazy.

If I wake up with a sore throat, I immediately start thinking about what could have triggered it. Did I do too much yesterday? The onset of aches in the evening (which is actually very common for me) sets my head spinning – Was it the trip to the grocery store?  The walk two days ago? Was book group too much for me this week? The slightest sniffle can put me in detective mode – Have I been exposed to a cold? Did something set my allergies off? Should I start antiviral supplements or allergy supplements?

The past two months at our house have been one big ball of mystery and uncertainty. Our college son came home sick in mid-November with a high fever (unheard of for him), severe sore throat and swollen glands. The fever alone was alarming, since like many of us with ME/CFS, he has a lower-than-normal temperature of about 97.5 F typically. The highest “fever” he’d had in the past 10 years with ME/CFS had been 99 and all of a sudden, his temperature was spiking up to 103 and 104. This was not “just a crash.”

We took him to Urgent Care that weekend, and they did a mono spot (quick mono test) that came back positive (note: mononucleosis is known in the UK as glandular fever and is caused by the Epstein-Barr Virus – EBV). Well, that explained everything. Previous EBV testing had shown that he’d never been exposed to mono before, and I’d dreaded this happening ever since he was diagnosed with ME/CFS since mono is a known trigger for it.

However, that explanation started to fall apart the following week. Given the uncertainties of ME/CFS, our primary care doctor ordered EBV blood tests, just to be sure. They came back negative. We floated all kinds of theories – maybe he wasn’t making the antibodies to EBV? Maybe the test had been done too soon? And there we were again, stuck in a state of mystery and uncertainty.

His illness certainly seemed to follow the classic pattern of mono – but then again, ME/CFS tends to mimic mono anyway. His high fever lasted about a week, his severe sore throat a few weeks, leaving him totally exhausted and with no energy at all. At first, even reading required too much energy…and he normally loves to read. As weeks passed into months and he stayed on the couch, we grew more and more worried. Because mono is a known trigger for ME/CFS, it could easily cause a long-term worsening. As the holidays passed and then January, we wondered whether he’d be able to return to college when spring semester started in February. Would he even be able to catch up on his remaining work from fall semester?

Last week, during a routine visit to his Lyme doctor, bloodwork was run, and I asked the doctor to include another EBV test. The results came back early this week – EBV was still negative, showing no sign of exposure now or in the past. Moreover, his white blood cell count was very low, and a few other CBC measures were high. Now, my analytical side kicked in again and my tenuous acceptance of uncertainty disappeared. What was going on? Why wasn’t he getting better? If not mono, then what??

I consulted with three different medical professionals – our primary care doctor, our dietician/biochemist, and an Infectious Disease/CFS specialist we see. They all said not to worry about the low white blood cell count – it was just an indication he’d been fighting an infection and should come up on its own. The dietician mentioned some possibilities for the other abnormal lab results, and our doctor ordered the blood tests she suggested. It was the ID/CFS specialist who came up with the answer that set my mind at rest, though.

She said that with two negative EBV tests, he hadn’t had mono and that it was likely he encountered some other nasty virus that triggered a very severe crash. I’d figured as much myself but was still mystified over the initial high fever. Then she added an offhand comment, “Maybe it was even influenza,” and the lightbulb went on! Three days after our son came home sick in November, my husband got the flu. At the time, we thought, “Wow, what a rash of bad luck. Good thing we cancelled our Thanksgiving travel plans,” but now the puzzle pieces were fitting together.

We may never know for sure what knocked our son down so hard, but it is very likely it was the flu. As is typical with viruses and ME/CFS, he didn’t fully “catch” it (no cough or congestion at the time), but he was exposed to it, and it triggered a severe immune response (i.e. ME/CFS crash). Flu explained the rare fever, and it was likely he was carrying the virus and infected his dad.

Even better than an explanation, our son has been – finally – starting to improve the past few days. He’s been able to do some schoolwork each day, and he’s scheduled his make-up final exams for next week. He actually went out on his own yesterday – first time in 2 months! – to drive down to his campus apartment and pick up some things he needed. Most of all, we have seen him coming back to life – smiling and laughing and even teasing his brother.

We are hugely relieved that he is beginning to improve, but you wouldn’t believe how much better I felt just having a theory that made sense and fit the circumstances! Having a logical explanation that fit the blood test results and the symptom pattern made me feel so much better.

It was the same when I was finally diagnosed with CFS a year after getting sick – such relief at having a name for my illness! Not only that, but with a name, I was able to start learning about my illness. This was not just an emotional comfort to me but had very real, practical effects – understanding my illness allowed me to regain some control over my life. This was especially true of learning about the exercise intolerance of ME/CFS – suddenly, I could see a pattern to the seemingly random ups and downs and could avoid some of the crashes. Same thing when I learned about Orthostatic Intolerance a few years later.

So, I guess my pathological need to explain things, to find the cause for every effect, to solve the never-ending mysteries of ME/CFS has some practical benefits. Living with ME/CFS for almost 13 years now, I’ve become more accustomed to living with uncertainty (though I still don’t like it!). I’ve also had to accept that I can’t always find answers, that sometimes a Why goes unanswered. Our family has learned a lot about living with so much uncertainty. We’ve certainly become accustomed to last-minute changes and cancellations, as this past holiday season showed!

How about you? How do you live with the uncertainties of ME/CFS? Any other analytical types out there like me who also constantly try to answer why?

4 comments:

  1. Me! Very analytical (lol), but knowledge helps rather than being (at times) house or couch-bound and clueless. Go-go workaholic types don't do well twittling their thumbs. So, I poured the energy I had into research (at times this was read a few paragraphs and rest) and doing all I could to get improved health so I could get my life back more so. That interlaced w/ fun vlogs, beauty/make-up Youtube vids, movies and TV shows in between. The blog you did on taking a break and really resting rather then constantly being on the computer or media resonated w/ me. I'm guilty. Making accomplishments virtually subbed for not being able to physically...cleaning, exercise, etc. As a teen I had times I couldn't handle the stimulus of riding in a car much, the computer screen except late in the day when less fog & symptoms, or watching TV at times--so I couldn't have those nice distractions. I could tell you all the detail in color and pattern on my drapes! Haha. I stared at them a lot. The trouble riding in a car made getting help hard in the beginning at times. I've heard those severe sensory/nervous system type symptoms are much more common in teens w/ ME/CFS. I recall for mos (I think 6-9) after illness onset my dad would want to watch movies together and I'm sure he thought it'd help to have enjoyment from that but I tried explaining that I couldn't and eventually I had the verbiage. I love the Fast and the Furious, Gone in 60 Sec, all types of action, adventure, and car/action movies but I got sensory overload and couldn't handle the action scenes and loud noises. With that it affected how I viewed scenery...it felt like i had tunnel vision. In my neighborhood there are palm trees in groups lining the center of the road and I could only take in parts of the scenery at one time. I came to realize no one (besides my Rheum at Stanford who did her best under the FM-like guise and sensory amplification) else was going to educate me on why I was experiencing certain things and I decided to learn on my own...and very quickly had more knowledge on the topic than most Dr's in the area I'm sure. That being said their knowledge is up to date circa about 1995. It boggles my mind, but they weren't taught it in med school as Jen Brea has pointed out. If they run across a patient I feel they have a responsibility to LEARN about it...so they don't fail the "do no harm" part of the oath they took. And they have to have knowledge to be able to spot CFS. I am in a Principles of Health Ed class and my prof is a supervisor w/ the county dept of health as well as has her Masters in health education and is a Certified Health Education Specialist w/ the CA and she doesn't know much about it. Makes you realize how far we have to go. Hoping they blast info across state and county organizations about CFS after the P2P and IOM reports are finalized and released.

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  2. I used to experience this more but I have experienced similar to the flu thing...esp up until I was 19 or 20. I'd feel like I was getting sick or fighting a cold bug for weeks. Then sometimes I'd get run down enough I'd get it full-blown -or- it would eventually just go away with no big viral event. My dad would say to take all my supplements but I usually already was. Once I went off all of them in hopes I'd get sick quicker IE then better quicker and not be in a prolonged sick-ish state. It's hard to explain to school etc that you can't do things b/c you are sick...but only have a mild running nose, slight cough etc...for wks, but extra fatigue. I had a low WBC and Lymphocytes for months...maybe up to a year after initial illness onset of ME/CFS 5/14/06. I'd have to check recs. When it changed (I know this clearly b/c my Dr sent me regularly for CBCs) was after I started Immunocal by Immunotec. It is the only thing that made a clear difference after trying a liquid vitamin, lots of green tea, clean diet etc. I'd always taken vitamins my whole life. Within 3 days of starting Immuocal I could eat at the dinner table instead of in bed. I had been eating in bed for at least 6 months b/c of only being able to sit for short periods before I was wrung out. I was taking Immunocal w/ re-onset and it still happened but I was on a small dose. W/ fatigue it'd always pulled me out of holes and helped me keep going after helping me initially. However it just didn't seem to have the same effects w/ relapse. The trigger as a teen was viral however and this time was stress...then bacterial infections.

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  3. Abdulrahman6:09 AM

    Hello Sue,

    Here is how I succeeded in curing my Chronic Fatigue and getting rid of CEBV for 4 months so far, its a full treatment solution that worked for me and others, its at the following link :

    http://forums.phoenixrising.me/index.php?threads/a-proven-treatment-cure-for-chronic-epsten-barr-virus.32259/

    Please read all the posts on this thread carefully as some are new concepts and justification for this CEBV treatment method is complicated and needs to be absorbed slowly. In the end, its your judgement of what works best that will lead to to a succesfull cure of this disease. Notice that my own belief contradicts conventional medicine belief that majority of us have an Epstein Bar Viral infection that is the same as everybody else has experienced…….this is not correct, our viris is a very powerful mutation of the milder standard EBV, and thats why it becomes chronic; the immune system has an extremely difficult time trying to eradicate this dangerous virus.

    Abdul

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    Replies
    1. So glad that you found something that worked for you! Thanks for sharing your success with me and my blog readers - I will go take a look.

      Sue

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